Customer Reviews

The Chronic Illness Experience: Embracing the Imperfect Life

5 star:		(9)
4 star:		(1)
3 star:		(0)
2 star:		(0)
1 star:		(0)

 

 

I have lived with a rare chronic illness scince age 5. I was given a used copy of the first edition of this book at age 19, my body was failing & the doctors didn't know what to do. I started reading and within the first few pages I felt a connection to people I will never know, the "characters" were real people, of all ages and diseases. It spoke of the frustration they feel when their bodies hurt, it explained that chronic illness does not only affect the afflicted but everyone around them; their families, friends, and the doctors. I read the words that I had always felt but couldn't find a adequate way to express them, it made me realize that I was not alone. This book is like a instant support group, letting you get to know these people in such a intimate way and at the same time allowing yourself to find the confidence to take control of your illness. There is no psyco-analyzing or "shrink" talk, these are real people speaking from their heart. The author compiles the chapters in such a way that the subjects never get monotonous, you never read the same topic twice. Anyone who lives with a chronic illness or has a loved one who does should read this book, it will open your eyes to this unspoken and misunderstood world of chronic illness. This book is honest, simply spoken and a easy read, get it..I am so glad I did.

This book can make you both smile and weep, as did its predessor, "Living With Chronic Illness." "The Chronic Illness Experience: Embracing the Imperfect Life" is probably one of the most important books in my collection as I deal with chronic illness myself. I met the author in 1990 and heard her speak about the unique nature of rare and chronic diseases, and found myself nodding and smiling throughout her talk. If you are dealing with a chronic illness, you will re-read this book (or sections of it) for years as you experience different problems. I've marked mine up with yellow highlighter and underlining and have shared it with family members and friends to increase their knowledge and understanding of what it's REALLY like to live with a chronic illness.

As someone who deals with a couple of chronic illnesses I found this book refreshing practial and inspiring. It is packed with real life experiencies and what can be learned from them.
This book made me laugh, taught me things and relieved me that someone else felt like I feel. I highly recomend this book for not only chronically ill individuals but family, friends, interested parties and medical professionals.

This book is not so much about self-care -- exercise, diet, medications, relaxation and such -- but it is very strong on getting the support you need to live successfully with a chronic condition. I used her material extensively in writing The Art of Getting Well: Maximizing Health When You Have a Chronic Illness.

Most of us don't like to ask for help. It makes us feel weak, guilty, needy or even "un-American." But mutual assistance is the way the world works. Register gives powerful reasons to ask for and accept help, likely places to find it, and ways of paying people back. She points out that most people like to help, and that we can help others in our turn.

Her book is also very strong on dealing with the medical profession and financial issues, how to keep your illness from impoversihing you. She continues to thrive with her condition, teaches at a university and has written several more books. She is an inspiring and practical teacher.

Full of insight, understanding, and practical advise. This is a book from someone who's been there, done that, and found others to share the journey with. Together the people in this book share their experiences, challenges, and solutions. I highly recommend this book for anyone struggling with a chronic illness.

This book was recommended by the Arthritis Association, so I picked it up at the library first. I kept it well past the due date, and finally purchased a copy of my own because I know I need to read it again and again. It is first hand experiences from real people, confirming that what I am feeling is not unusual. I'm coping better since reading The Chronic Illness Experience. This is one book I will never lend out.

Update: I have purchased several copies of this book to share with people after they have had a scary diagnosis of a chronic illness, and they have found comfort from it too.

When I was first diagnosed with three chronic illnesses (all within a few months in 1999), I read up online and in the public library. I started with the CDC web site for reliable medical info and also found a disease-specific local support group. But what really gave me the aha! that I'm connected to all people with chronic illness was reading The Chronic Illness Experience by Cheri Register. Reading the words of so many people in that book - they were so much like me, even though our illnesses were different. It really helped me develop my identity as a person with a disability and I've made fabulous connections with other people with disabilities who understand disability as a way of being more than just medical deficit. Many of my symptoms have been lifelong, but I no longer identify (most of the time!) as a weak runt, which was how I saw myself before. Hooray for disability culture and for being able to recognize and appreciate the experiences of other people with invisible chronic illness. -- it becomes less invisible when you see yourself (and your fatigue, pain, etc.) in others.

I read this book under the original title, and went right back to the bookstore and bought all the other five copies they had in stock. One went to my lupus support group's library, and I wanted to have extras to give to others struggling with new and lifelong diagnoses (while holding fast to a copy for me to re-read over and over over the years--I knew I was going to want to, and I have.) A dozen or so years later, it is still the best-written book on the subject.

This is a book written by someone that has lived with a horrific chronic illness and really knows what she is talking about whne it comes to offering advice to others in similar situations.

This book is great if you have a somewhat relapsing and remitting disease. But I must say I found very very little here for coping with very severely disabling disease with no breaks! The type that is only rarely fatal, but is very disabling for years on end.

No one disease type is any worse than another, but the way one lives with a disease that is scarily life-threatening now and then but sometimes leaves you pretty much well for years at a time (as was the case for the author) is very different to some extent to how ones copes with a disease that is very severe and disabling to the point of making a person bedbound, housebound and almost unable to speak or read or write at all and so on.

I don't even remotely envy the author this type of disease, not at all, her experiences were really horrifying to read about. One cannot compare differnet types of diseases, horrific is just horrific.

I don't mean all this even as a criticism of the book really, as I am sure this book is suitable for many poeple and it is very engaging. Perhaps I am too picky but I just want to add this comment about it not fitting some disease types as well as others for the benefit of readers such as myself who will not get as much out of this book as some others might and may be somewhat disappointed with it. Horses for courses!

This book seems pretty great overall though. It contains much more than the usual superfical and commonly given advice. The author clearly knows this topic well and is passionate about the topic, and writes well.

(A note to my fellow M.E. patients: This book described a very different illness experience to severe M.E. so much of what was said wasn't relevent. For example, the author faced life and death medical emergencies now and then, but then was almost perfectly well for years. This is so different to what M.E. is like. This is a high quality book just perhaps not suited to M.E. patients and severe M.E. patients.)

Jodi Bassett, The Hummingbirds' Foundation for M.E.

Cheri Register's book "Living With Chronic Illness" was both validating and helpful to me.
Eight years of living with chronic migraines has effected my faith, self-image, independence, relationships, work aspirations and what I consider my purpose in life.
At first I tried to minimize the migraines disabling effect but over time and with more acceptance I have, for the most part, found ways to accommodate and live with them.
Register describes many of the challenges of living with chronic illness. Sickness in our culture is seen as an enemy to be fought and defeated. These war images cast chronically ill people as victims, and it's sometimes seen as a character defect if we experience suffering, grief or fear. Instead of #battling# the illness we can accept it as something we live with that is our normal state of being. The realization that we can be happy and sick is a major lesson.
Our culture expects a person's disability to be a test of character or an opportunity for heroism. People effected with illness should not have to prove their value to others. We are not better or worse, no more heroic or cowardly, strong or weak than healthy people. We are people first not a disease.
Other hurdles for the chronically ill include: loss of autonomy, (self-reliance and being financially self-supporting carries the imprint of virtue). For the chronically ill not pulling your weight is compounded by the fear of becoming indigent and feeling different. Unemployment not only involves economic loss but the loss of identity, productivity, self worth and a sense of meaning. Register says it is important to separate our economic and identity issues from the quest of human worth. When we accept our illness we can stop looking for a cause to blame or a miracle cure.
Chronic Illness challenges our relationships. Adversity can bring couples closer but with chronic illness the adversity comes and goes on a regular basis. The crisis may even become the core of the relationship. Illness highlights and compounds the gender differences. Females are trained to show emotion and males to hide them. It is easier for women to "be there" for intimacy and shared vulnerability. Women often want simple consolation from their husbands, what they get instead is a rational solution. Seeing their mate sick leaves many men feeling powerless. When a relationship requires sustained expression of thoughts and feelings it may become burdensome for the mate.
Register illuminates patience as a way of life for the chronically ill. Acceptance means taking realistic control over how we live and being ready for chaos. The "one day at a time approach" helps. When pain grows intense it demands complete attention. It also helps to focus on the recovery instead of the traumas.
Most doctors are more comfortable caring for acute illness. When medications do not work the patient rather than the medication is often blamed. Few doctors are honest about the limits of medical knowledge and trust patients enough to be partners in care.
Register acknowledges that anger, fear and grief are healthy responses to physical suffering. The value of catharsis allows us to face the emotions head-on rather than avoid or dismiss them. It is reassuring to hear that having suicidal fantasies are a normal consequence of chronic illness and not evidence of losing hold. Since most people do not act on their suicidal thoughts, considering death as a way out of the pain often diffuses the suffering. Also, when we confront the suicidal fantasy head-on it looses its power. Register even came to regard her own suicidal fantasies as a treasured choice. Knowing that suicidal thoughts are a feature of the illness is empowering.
Instead of asking "why me?" the chronically ill are better served by the question "what now?" And for people of faith we might ask, "what do you want from me God?" which implies not penance but fulfillment of a mission. Instead of seeing chronic illness as a punishment for sin, an endurance test, a divine plan geared to your natural capacity or a random event Register recommends we see chronic illness and suffering as central to the human condition. It is our own share of life's condition - a way of life not an aberration. Register says, to live with passion allows us to live with the dynamics of contradiction in joy and sorrow, caring and indifference, in courage and fear, in friendship and alienation. Passion is a fully human and divine spark that burns with life.
To answer the question "what should I do?" Register says, "Just live your life, pain and all with attention and purpose." Lived fully, the experience of illness can free us from the curse of perfection. For people of faith learning to feel God's pain makes us more attuned to God's pleasure. Life is a beautiful tapestry being woven with our lives, it's pattern visible only to God.
Register redefines the disabled hero as one who demonstrates a capacity to come through multiple ordeals with their will intact. Instead of winners and losers, survivors have moments of courage, moments of cowardice, moments of determination and moments of despair, moments of glory and moments of humiliation. That many of us survive these ups and downs is a miracle that happens many times a day.
Register describes the ingredients of survival for the chronically ill: a sense of humor, tenacity, a will to live, discipline, inner strength, trusting ourselves, inner peace, acceptance, a support system, faith, skepticism, and a belief in a Higher Power and Purpose. Instead of saying, "There but for the grace of God go I" we might say, "Here, with the grace of God, I am." Our bodies are, after all, our medium for experiencing creation.